Previous Topic

Next Topic

Moving on after treatment for a myelodysplastic syndrome

Since a myelodysplastic syndrome (MDS) is rarely cured, most patients never really complete treatment. Patients may go through a series of treatments with rests in between. Some people stop active treatment in favor of supportive care. Learning to live with cancer that does not go away can be hard and very stressful. Our document, When Cancer Doesn't Go Away, talks more about this.

Follow up care

Even if you have stopped your treatment for MDS, it is still very important to go to all follow-up visits. The doctor will physically exam you, order blood tests, and watch for signs of infection, progression to leukemia, and short-term or long-term side effects of treatment. You should report any new symptoms to you doctor right away.

Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can be permanent. It is also important to keep your health insurance. With a chronic disease like MDS, your treatment may never really be over. You don’t want to have to worry about paying for tests and treatment.

Seeing a new doctor

At some point after your cancer is found and treated, you may find yourself in the office of a new doctor who does not know about your cancer. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy and always keep copies for yourself:

A copy of your pathology report from any biopsy or surgery

If you had surgery, a copy of your operative report

If you were in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home from the hospital

If you had radiation treatment, a summary of the type and dose of radiation and when and where it was given

If you were treated with a drug therapy (such as chemotherapy, hypomethylating drugs, immunotherapy, or growth factors), a list of your drugs, drug doses, and when you took them

The doctor may want copies of this information for his records, but always keep copies for yourself.